Had I Known

by Joan Lunden

  After sharing the news with them, we asked that they keep it quiet until we figured out the right time and place to tell other family members on our own terms.

  Jeff and I had spent the day in New York City, making arrangements to start my first chemotherapy session, which would take place the next day. On our way back to Connecticut, we were going to a dinner to celebrate Janey’s birthday. I knew there would be a good chance that something would come up or slip. I didn’t want to detract from her celebration, but I wasn’t in an especially festive mood, and I’m sure I wasn’t doing a very good job of hiding it. All I could think of was how I would tell Jeff’s siblings. At the end of dinner, after all of the gifts had been opened and the festivities were coming to an end, I whispered to Jeff’s brother and sisters, Kip, Leslie, and Karen, that I wanted to speak to them privately and asked if they would take a walk outside with me.

  We all stood on the wide front porch of the restaurant as I slowly broke my news to them. I knew that once they had the information, they would feel compelled to call Jeff and me on a daily basis to check on how I was and to see if there was anything they could do. This is just the way this family operates. If one of them is going through a crisis, they all quickly rally. Anything short of that would be terribly uncharacteristic.

  I told them that the best way to help was not to call every day and check up on me. While I understood that this was antithetical to how they were all raised, I explained that I am not the kind of person who does well with a lot of attention at times like this. It makes me feel needy—weak. It feels overwhelming and stressful for me. I knew they were well intentioned, but I understood that if I didn’t put up boundaries early on, to give myself some peace without having to answer a lot of questions over and over, I’d regret it. I told them that I was planning to go public with the news the following week. I knew I would be besieged with well wishes and questions from friends, colleagues, business partners, and the general public and that my life would likely not be any type of normal for quite some time. I hoped they understood where I was coming from. It was the best I could do under the circumstances.

  This was all so new to me.

  To all of us.

  Aside from the family members who already knew, I had let only a few of my closest friends and advisers in on my little secret. They all agreed there was no chance of keeping it private for long and that I needed to be up front about it. They knew me well enough to understand that this was how I had always lived my life: sharing my journey with the desire to help others.

  If I was going to go public, there was no question whom I wanted to talk to. It had to be Robin Roberts.

  Robin had waged the same battle I now faced, and she had dealt with it publicly, with such dignity and grace. And, of course, she now sat in the seat I once held. She would understand better than anyone what I was facing, from all points of view.

  I picked up the phone, called ABC, and asked to speak with Robin Roberts. Robin is just so lovely and compassionate. She immediately lent me her ear and her understanding. I had a million questions for her but tried to stay on point. I told her what I knew so far and what chemo/surgery/radiation regimen I would go through. It felt so comforting and reassuring to talk with someone who understood the journey and to compare notes, knowing that she had made it through the same diagnosis and was now cancer-free.

  But as I wound down my lengthy explanation, I heard a cautionary pause in Robin’s voice as she said, “It’s no picnic, Joni, I’m not going to lie to you. But you will survive this.”

  We were both quiet for a moment.

  She suggested the sooner I go public, the better. “Pick a day, any day in the next week, and I will be there with you to support you.” She encouraged me to share my news, to let people know how I was doing. Robin assured me that being out in front of the situation would make me feel a lot better. “The day I went public, I felt a huge weight off my shoulders,” she said.

  I told her that I didn’t want to feel like a victim or have people feel sorry for me. I wanted to be a warrior, to help motivate other women to get their checkups every year and protect themselves from getting cancer.

  We were both living examples of how women can fight and survive this kind of cancer, especially if you catch it early. I shared the story of my father and his untimely death, telling Robin that his legacy was my main motivation to help fight the war against breast cancer.

  Robin said, “You tell the television audience like you just told me, and believe me, you will make an impact. You will make your daddy proud.”

  I knew she was right. There was no better place for me to make my announcement than among the safe and secure arms of my GMA family. We decided I would appear the following Tuesday, June 24, 2014, when I would let the world in on my secret: that I was one of the nearly three hundred thousand women in the United States diagnosed with breast cancer in 2014.

  CHAPTER 7

  The Day I Started Chemo

  If you have a friend or family member with breast cancer, try not to look at her with “sad eyes.” Treat her like you always did. Just show a little extra love.

  HODA KOTB

  Cohost of Today, diagnosed with breast cancer in 2007

  I woke up on my first morning of chemo reluctant but ready to go into battle. I had never given chemotherapy a consideration, though I had worked on several media campaigns in past years when I had to study up and understand chemo infusions and the side effects that might occur. But that was research about something that could happen to someone else, a cancer patient. Not to me. It did leave me anxious, not panicked at all, just scared. I hadn’t slept well, since I was nervous about the next day, but they tell you not to take any meds because they might interfere with the chemo infusion. So much for taking an Ambien.

  By the time I was ready to leave the house, I had psyched myself up for whatever lay ahead. Robin had told me it wasn’t going to be easy. But the things in life worth having never are.

  There was just one thing I was dreading.

  That damned needle.

  Oh yeah, the needle that will be inserted in my arm so the doctors can start the infusion.

  I know I’ve already mentioned this, but I DESPISE needles!

  No, I mean I really, really HATE them!

  You see?

  That’s how much I can’t stand them!

  I know it’s a learned fear—one I’ve lived with my whole life—and one I’ve tried not to pass on to my children, but it’s one I have nonetheless.

  It used to be a lot worse. After many hormone shots during several rounds of fertility treatments, and then two years of allergy shots, I actually got a little better with needles.

  The only good news I got when I was diagnosed with cancer was when the oncologist said I had to stop getting my allergy shots! My fear of needles was the reason why I didn’t get allergy-tested for the longest time. I knew I would be told I should be taking allergy shots, and I didn’t want to. When I did get tested, of course I was told that if I really wanted to be cured from all the allergies that had plagued me for years, I needed to take two shots in each arm once a month. While they have helped tremendously, fortunately, I thought to call and ask my oncologist the day before chemo if I should be going in for my scheduled allergy shot, and the answer was a resounding no.

  Whew! No more allergy shots for a while! I thought.

  And even though the thought of not having to deal with my allergies for a while might have been appealing, that quickly faded when I discovered the allergy shots aren’t nearly as bad as starting an IV in the veins of your arms every week for chemo.

  That really flipped me out!

  Jeff and Lindsay were with me for my first chemotherapy treatment. Every day I counted my blessings to have such love and support all around me in the form of my family and friends. There is no way I could have made it through without everyone rallying around me the way they did.

  I took a deep breath when the nurse said it was time t
o get started. Sure enough, it took a few stabs in the arm before the oncology nurse found a viable vein to start my first chemo infusion. Naturally, this would happen to the ultimate needle weenie on her first day of chemo.

  Once the nurse finally got the needle in my vein, the rest of the treatment process was relatively easy. I pretty much sat back in a big easy chair and let the chemicals drip into my body for the next several hours. There were pre-meds dripped in first, followed by anti-nausea drugs, steroids (which would hype me up for days), and then Benadryl, which made me really drowsy for the rest of the treatment. Benadryl (also called diphenhydramine) is given as part of the pre-medications to prevent possible hypersensitivity infusion reactions to Taxol—and it is also sometimes used in anti-nausea regimens. Taxol, or more specifically the carrier that the drug is in, called Cremaphor, can cause itching, hives, or even wheezing. The dexamethasone, ranitidine, and Benadryl given on Taxol days are to prevent this reaction.

  I’d taken along my Kindle, thinking I would get through lots of reading, but the next thing I knew, thanks to the Benadryl, it was lights out—I quickly fell asleep!

  Much to my surprise, the overall first-day experience wasn’t that bad. Now I would have to go home and see how the Taxol affected me.

  For my first treatment, my doctors had made a decision to start with only the Taxol and not the more potent medication, carboplatin.

  Once we got back home and I got settled in, Jeff had to reluctantly pack his car and hit the road for the six-hour drive back to Maine. Although I was now deeply immersed in my treatment, he had to resume all of the tasks involved in opening up his summer camp. I knew he felt so conflicted, which was the last thing I wanted him to be dealing with. I could see it in his face, in his eyes. Leaving for Maine was such a tough dilemma for him. I know what it’s like to have to be somewhere else when you want to be home with your family. I’d spent years having to go on the road for GMA and be away from my kids when they had bouts of the flu or chicken pox. My heart sank every time I couldn’t be there for them. It never got any easier with time, either. I worked very hard never to miss important moments—school plays, birthdays, dance recitals, horse shows, and never, ever a parent-teacher conference. And I did my best to be home as often as I could be, though my job called me away at times. Now here I was, dealing with this unexpected disease at the most inconvenient time. And though I knew Jeff didn’t want to, he had to leave. The only silver lining was that I would soon be heading up to Maine with our four youngest kids, whose last day of school was a day away, so we wouldn’t be far behind. That surely made everything a little easier.

  There was one thing weighing very heavily on me. Although I had known about my diagnosis for ten days, by the time we were leaving for Maine, I hadn’t told the younger kids about my cancer yet. I don’t think they suspected anything was wrong, because Jeff and I kept everything startlingly normal. For a moment, we even contemplated whether we could get away with sending the kids to camp without telling them anything at all. Of course, that was just a thought. We knew we had to be honest with them, because if they found out the truth while they were at camp, they’d never trust us again. We’d always been forthcoming with our children, so despite the nature of the news and my maternal inclination to protect my children from anything that would hurt them, I had to be honest about my diagnosis, too.

  Things were happening so fast, but we wanted them to finish their school year with all of the happiness and joy they deserved, especially Kate and Max, who were celebrating their birthday in the midst of this chaos. I didn’t want anything to detract from their celebration. But I also knew the word of my diagnosis would be slowly leaking, and with my impending public announcement, the time had come to sit them down and tell them the truth. I didn’t have it in me to do it on my own. I was scared to tell them. As a parent, you want to protect your kids from everything bad in life, but especially from something like worrying about Mommy having cancer. I definitely needed Jeff by my side for this one. It made a lot more sense for us to talk to them as a family, and therefore, it would wait until we were all in Maine for the weekend.

  Once we arrived in Maine, I couldn’t stop moving.

  Seriously!

  I was running around like the Tasmanian devil from the steroids they gave me during my chemo treatment, nervously trying to get all of us settled in for the next three months. I was a little surprised at how good I felt—like I could take on the world. But I’d had only one treatment. I had no idea what was coming. As soon as those steroids left my system, I had been warned, I could be left feeling crummy.

  Max, Kate, Kim, and Jack would be leaving us in a few days to spend the rest of the summer as campers, which gave us only a few days together before we all went our separate ways. They wouldn’t be back in the house until the end of August. We would have the conversation over the weekend, so we would have a few days with them before they moved into their camp bunks. That way, if they had any questions, we would be able to answer them.

  To make sure I broke the news to the kids in an appropriate way, I had asked Dr. Oratz and her staff for advice on how to handle telling young children. They said that being honest was the only way to go. Child psychologists warned against trying to keep cancer a secret, because family secrets are a lot harder to keep from children than one might think—children sense that something is going on, and unfortunately, their “imagined” problem is usually worse than the truth. The experts also pointed out that not being honest with children can create trust issues later on.

  Jeff and I called the four kids into the living room and sat them on the sofa for a family meeting. Jeff did the talking, as he is an expert at talking to young children and so much better at communicating these types of things than I am. He had given a lot of thought to how to discuss it in a very age-appropriate way. I was afraid I might break down, and that was the last thing I wanted to do in front of our children.

  Jeff told them about my cancer diagnosis and said that the treatment for it had already begun. He explained it would be going on for several months. He reassured the kids that I had a very good prognosis because we’d found it early and could treat it quickly.

  Telling your children you have cancer is a parent’s worst nightmare.

  Oh my God, how I wished this were a dream I could just wake up from.

  But it wasn’t.

  Cancer was my new reality.

  To be certain, cancer is a super-scary word for kids because it can mean so many things. We didn’t want to frighten them; we needed them to understand my cancer was treatable. They all listened intently, with wide eyes, as Jeff explained that my treatments were going to be very strong, and because of that, there would be some side effects.

  Kate asked, “Will Mommy lose her hair?” Kate is eleven going on sixteen, an old soul and mature beyond her years. She is very smart, and I knew she would understand the immensity of this family meeting right away. It would be difficult to ever try to pull the wool over the eyes of Kate.

  “Mommy will lose her hair, and she may not be feeling so well,” Jeff responded in a soft and loving tone.

  Then Max asked, “Is Mommy going to be okay?” Max is the most loving little boy. He is very sensitive and affectionate. I knew he would likely be the most worried. I didn’t want to let him see how nervous and emotionally fragile I was, especially early on.

  Jeff reassured Max, “Mommy will be fine.” He told all of the kids that the process would take time, and we would give them constant “Mommy updates” so they always knew what was going on.

  I had a huge tight knot in my stomach and a giant lump in my throat, and it was really hard not to get teary as I listened to Jeff talk with the kids. It’s a delicate balance to know how much young children can absorb when you tell them something like this.

  By not crying, were they being brave for my sake?

  Jack and Kim, at only nine, sat silently and didn’t say anything. I wasn’t surprised, though. Kim is usually quite sh
y and quiet, although she is blossoming into a beautiful young lady, and she’ll get up on a table and belt out a song at home with the family or lip-synch and dance with her sister to the latest pop tunes when no one else is looking. Jack is a very sweet, compassionate boy who is always concerned about every other kid in his class. He is quick to run and get me anything I need, even when I’m not sick, so I knew he would want to be attentive, though he was sitting quietly at that moment, taking it all in.

  I suppose kids will be kids, because as soon as our family meeting ended, we were all out the door to dinner. We thought a lighthearted dinner would balance the heavy-hearted conversation we’d just had. And it did.

  A few days later, when camp opened for the summer, it was business as usual. The kids were off to join the other children and find their bunks, and Jeff went into high gear heading up what is essentially a summer resort for children. It’s a huge job, overseeing several hundred children ages seven to fifteen, as well as several hundred counselors and grounds staff and kitchen staff, and safeguarding the lives of everyone. I’m always in awe, as he is such an amazing leader and role model: always calm, always fair, and always understanding of each and every one of the campers and counselors. I don’t know how he does it with such attention to detail, but he is truly masterful.

  One thing I knew for sure: I didn’t want my cancer to distract or upset him. The last thing I wanted was to be a burden. In truth, I didn’t want to be a burden to anybody.

  Ugh!

  The thought caused me so much stress.

  I’m a pleaser.

  I’m a fixer.

  I’m a doer.

  I’m a do-gooder.

  I’m a loyal, hardworking soldier.

  I’m a mom.

  I’m a wife.

  I’m a caretaker.

  BUT I AM NOT A BURDEN TO ANYONE.

  This was perhaps one of the scariest parts of knowing I would be battling cancer and everyone else knowing that I was fighting this battle.